We made it downtown and to the clinic with only a few bad spots on the road due to the snow, ice, and cold weather. Once we were in the clinic, they got Kayla checked in, accessed and in to see Marnie pretty quickly. They also gave her zofran right away. The plan for the day was to give her zofran as soon as we got there and then give her a second dose before we left. . . six hours from the first dose.
Marnie told us about the discussion on Kayla's case at the Brain Tumor Conference. She explained the thicker part of her optic nerves. . . that was where the remaining part of the tumor was located. There was such a significant decrease in size between the previous two MRI's that there wasn't another significant decrease, but there still isn't much left of the tumor. She told us that everyone at the conference agreed (which is good . . . ) that she is doing great and the treatment is working great, so we will just keep plugging along.
Our day in the chemo suite was LONG. We did have fun, though. Kayla had some music time with Miss Stephanie and Miss Irene, watched a little Snow White, ate lunch, colored, played with the dollhouse, played with play-doh, and went on a few walks around the clinic. They have been doing a lot of construction , so the part of the clinic across from the chemo suite is completely walled off. Kayla had a lot of fun with Miss Jenn and a few other kids there coloring pictures on the wall with markers.
While we were there, I got a call from the allergy clinic that Benson goes to and they had a peanut allergy kit there for us to pick up. It happened to be in their Boise office, so I thought that was convenient since we were there. I told them that we'd pick it up on the way home.
Well, Kayla couldn't have her second dose of zofran until 4:30PM. We took more walks around the clinic. All of the nurses and staff love to hold Sadie and try to get her to smile. :)
When Kayla finally got all done and de-accessed, we headed out the door. I wasn't sure exactly where the allergy clinic was, so we set out driving to where the lady on the phone told me to go. We didn't leave the clinic until about 5PM, so I called the allergy place to see how late they were open. Luckily, they were open until 5:30PM. So, after driving around forever trying to find this place and calling them for a little extra help (which wasn't helpful) I finally found it. We got there right at 5:30PM, got the kit and went to fight the rush-hour traffic.
We got home after 6PM and I was so hungry. It was so nice to have dinner there when I got home! Thank you visiting teachers! Tacos totally hit the spot. :) It was also really nice to not need to worry about getting Kayla to take zofran before going to bed. :)
Kayla did wake up throwing up around 5:30AM. She threw up a few times that morning, but it wasn't too bad, so I wasn't too concerned about getting her to take more zofran, although, I did sneak it in her water that she refused to drink. Oh, well. We survived.
Just a note, I got a call from Marnie that next day and she told me about a drug that is a cousin to zofran, but it is a longer lasting one. . . 3 days! She had already talked to Dr. Hansen about it and he had figured out a dose for Kayla and we are going to try it this next week. That means one dose at the clinic and she is good for 3 days! The only thing is that since it is a cousin to zofran, it has the potential for the same side effects when it is given with pentamidine, so even though Kayla is due for pentamidine this week, we are going to put it of for a week (because next week is an off week and she won't need zofran's cousin - I can't remember the name).
You guys are amazing. You stay so upbeat through the struggles. I am constantly uplifted and inspired by you and your family as I read your posts. Thanks!
ReplyDeleteAnd on a side note, your children are adorable. I love Kayla's purple flower and the shots of Sadie are so cute.
Thank you, Carol!
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